Best docs in US

[givingITMybest]

I've struggled with RLS for over 30 years. I also struggle with PLM and insomnia. I'm now taking trazodone, tizanidine, pramapexole and gabapentin. I don't want to take all these meds and have read the danger in taking some of these meds. My sleep only gets worse. I live in Seattle, WA USA. I'm thinking of seeking help from either one of the Mayo Clinics or Dr. Berkowski at the Cleveland Clinic. I don't feel my current doctor is helping especially with his encouragement to take pramapexole. for those of you in the U.S. I'd like to hear recommendations for doctors or clinics where you feel you've really worked with experts for RLS and PLM. Thank you

[SueJohnson]

Try Oneil Bains [phone] Seattle. He has been recommended to the RLS Foundation. However although the doctors have been submitted to this list by someone who used them and found them knowledgeable. They still might prescribe dopamine agonists which you don't want and/or they might not prescribe opioids if you need them. The reason is that the person that submitted the name might have been happy with a dopamine agonist and without an opioid. The best way to find out if they are knowledgeable and uptodate is to ask if they have read the Mayo Clinic Updated Algorithm on RLS. If you haven't read it, it is at Https://mayoclinicproceedings.org/a... If Dr Bains is not familiar with it a much closer doctor who is one of the authors of the Mayo Clinic Algorithm and one of the best doctors in the world is Dr, MarkBuchfuhrer in Los Angeles, CA 866- 592-2199

[Munroist in reply to SueJohnson]

Hi Sue, do you mean Dr. Mark Buchfuhrer in Los Angeles?

[SueJohnson in reply to Munroist]

Yes. I was in too much of a hurry when answering. Thank you for catching this.

[TheDoDahMan in reply to Munroist]

A minor correction: Dr Buchfuhrer's office is actually in Downey, CA, a suburb of L.A. The phone # given is correct.

[givingITMybest in reply to TheDoDahMan]

Thank you, much appreciated

[SueJohnson in reply to givingITMybest]

This is the correct phone number 866- 592-2199

[SueJohnson]

Have you had your ferritin tested? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[givingITMybest]

Thank you, Sue. I've read your recommendations in posts to others. Much of the above I have implemented, some things do not work for me. I do not drink alcohol or eat sugars in the evening or even every day. My current doctor has me on trazodone, tizanidine, gabapentin and pramapexole which I want to stop. My sleep hygiene is pretty good. I want to try and wean off all but the gabapentin if i can. I do get my iron checked and have had iron infusions. I also have an MPN and fungal infection, so some complicated medical conditions. I feel I need to start from scratch.

[SueJohnson]

I meant Dr. Mark Buchfuhrer

[Joolsg]

I'm not in the US, but I would recommend Dr Berkowski. I've been in correspondence with him and he really is very knowledgeable and will help you off Pramipexole and advise on reduction of the other drugs you're taking.Dr Mark Buchfuhrer is also highly recommended.

[Merny5]

I have had contact with both of these fine doctors. I have never seen doctor Buchfurer, only email. I did see Dr. Berkowski and he is wonderful!

[givingITMybest]

Thank you. I had come across his name.